We are all blind to the future. Our ability to predict is limited to extrapolating from what has happened recently. So often, living with a chronic, progressing condition requires us to make the best choice we can with the information at our finger tips. If we are introspective enough, we may look back to see the clearest path to better light the way for those behind us.
This past week, I was lucky enough to read about two such reviews of past events. One was an MS study looking at the impact of delaying treatment of MS by 3 to 5 years versus beginning treatment immediately on deaths due to “MS complications” over 21 years. The other study was a study of Harvard graduates over 75 years in an attempt to discover what men need to be happy.
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http://multiple-sclerosis-research.blogspot.com/2014/03/cause-of-death-on-interferon-beta.html
On the MS study, it was conducted from 1990 to 2011 looking at the effects of early treatment for MS patients with interferon-beta. Realize, 1990 was the beginning of a decade which brought us many advancements in MS care, and care for MS has come a long way in the last 20 years. For the trial, half the patients were given interferon-beta, and the other half were given a placebo. After three years to five years, the placebo group received interferon-beta. I know it is often said to patients, “ MS is not fatal.” However, of the 69 patients who died in the intervening 21 years, 78% were judged to have died from “MS related complications” including such things as swallowing problems leading to pneumonia, urinary dysfunction leading to UTI’s and septicaemia, falls with fractures, etc. The mean age-at-death was less than 52 years for the participants who died. Those in the placebo group experienced an excessive number of MS-related deaths.
Keep in mind, interferon-beta is less effective than many front line MS treatments now. In the past, I have advocated against the strict use of dots on an MRI determining the efficacy of an MS treatment. I want some measures of mobility and cognitive ability to assess whether a drug works. There have been a few studies casting doubt upon whether our current front line meds work in terms of preventing disability, but living or dying of MS complications seems like a great measure of drugs efficacy. The biggest hurdle to using it as an end point is the time it takes to learn the truth. This was a result from 21 years of patient data. Still, it seems this study shows the value of dealing with MS as best we can, as soon as we can. The failure to do so might just kill us, even if we do not understand the exact mechanism by which slowing our MS prolongs our lives.
To my mind, it comes back to my old motto, “Do what you can when you can until you can’t. Then go to bed knowing you have done all you could, and tomorrow will arrive anyway.” As I read this study, the ending could be changed to “…OR tomorrow’s tomorrow may not arrive at all for you.”
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The second study, the one of Harvard graduates, began in 1938 began with over 200 Harvard men and tracked them into their nineties, well beyond traditional retirement years. It tracked a huge number of variables from political leanings to social lives to various physical conditions. The study is fascinating if only to track a cohort of men through their lives.
It’s not exactly a representative sample. The sample isn’t just college educated men. It’s men privileged enough to go to Harvard. When it talked about the drop in average salary from bad choices, I kept thinking my grandparents would have liked to have a salary big enough to have so far to fall. However, I think many of the points likely apply to us all. Drink and drugs were the mostly likely to derail a good life. The warmth of our relationships in large part determine our happiness, and our health in old age is mostly determined by our decisions and habits as adults not our genetic make-up.
I think of this study with respect to MS, and it is a bit terrifying. According to the MSresearch blog, MS patients are twice a likely to divorce as healthy people. Many MS patients become clinically depressed. So often our ability to relate to health fades. I no longer remember what it is to be without pain, to be clear headed, to feel strong. Maintaining warmth in our relationships is a challenge to all sides. Yet, I can tell you the warmth of my relationships maintains me and my peace of mind.
I would like to think some of my habits will help me as/if I age. In the study men’s old age health was better linked with their choices than their genetics. Towards that end, what began with taking stairs rather than elevators has progressed to running and rowing three or four days a week. My family has a history of heart disease and cancer, but if one believes this study, what I do matters more.
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As I thought about these two studies this week and doing what seems best with the limited information I have when I don’t have all the answers, I think of this quote:
“…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”
Rainer Maria Rilke, 1903
Maybe these two studies will let us see a tiny sliver of the answer. If we are lucky, maybe we will live our way to the next peace of the puzzle. If we are truly fortunate, we may even have a chance to light an easier path for those who come after us.
Yeah, exactly. After all my reading, I decided to start treating exercise as though it were every bit important as my daily shot. It seems to have helped my mood and my physical well being. But is it really helping? I mean, does it keep me from being one of the young and dead? That’s why I liked your post; I don’t guess we get to know the answers to some questions. I should stop letting it make me crazy.
Cat, it sounds like you already have some of your answer if it seems to be helping. That said, none of us is promised tomorrow. That’s true for everyone, but before MS, I was one of the huge crowd of the “invincible in my own mind.” There was always a tomorrow. Now I think about the “what if’s.” When I started going crazy wondering if this diet or that exercise would give me the best results, I realized what I really needed was to just act in a way to be more healthy than I was. “Better” I could do, but worrying about best would only drives me nuts.
Thirty months later, I look back and note all of the things I do on a daily basis which I could not do then. Would my MS have remitted as much anyway without the exercise and slight diet modifications? Who knows? For now, I feel better, and I do more. It is only with hindsight I say, “For right now what I have done seems enough (most days).” That said, my self doubts have never gone very far away, and I am keenly aware of the melted ice statue problem from the Black Swan when I want to credit my current MS state to exercise or anything else I do:
http://thelifewelllived.net/2013/11/26/problems-with-our-approach-to-knowledge-of-ms-origins-part-2/
Good luck, and thanks for reading my post.